my drifty life

[em]

My thoughts are I have noticed some good questions and concerns in living with HIV

Was just thinking about the past that I lived through. Made it this far and would like to write some place about My experiences and how the fear of HIV and then having it had pushed me down a road I did not want to go down.

While in the service in the eighties I got in just before HIV testing was thing. while serving I was accused of being open minded about sexual relations. Everyone was under suspicion of being gay and there were those who wanted to out anyone who might be. to weed out the undesirables.  I know most reading this stuff think that is old news. Even now I believe from reading the military website they test for HIV before enlistment and if you are positive they will not allow you in. If you get HIV they will not allow you  to deploy. My experiences to boring to write about here even if most of them revolve around HIV. 

but thirty years ago it was all brand new. I had thought I had no place to go other then stay in if I could. I could not go back to my parents. come back with it or on it ?  So what am I doing now thirty years later  I am living well if I might say. I have a home and people who care about me as precarious as it might be at times, There are things I would like to do like see the total eclipse in August. Build things to see what they might look like out side my minds eye.

Sorry I am nervous of what to post after the last post was read about 1700 times. TO me that is a lot of people. Maybe not viral but still a good junk of readers.

HIV thirty years ago sorry if jumping time lines makes you dizzy buckle up. random tangents and dizzy thought are my specialty.

here is a thought from thirty years ago. My division officer in the military had told me just before liberty that there will be people out there looking and watching. so forewarned is forearmed. I left the ship and tried to be on my best behavior. Then well that is long story for a fire brandy and cigars and close friends share intimate thoughts. Not that i have any close friends the people I used to call friends well better off without. maybe another time in another life? Being on best behavior and not doing anything may lead to long life. Now that I am older I still want what I wanted when I was younger productive loving relationships. I have some and to many just mucks up the works does not end well for all concerned. I have some old thoughts that run amuck in my mind from time to time but that makes me more interesting I have been told ?

maybe some time if a place exists were old man can have a smoke and a drink and tell stories my turn might come up. Heck I might live to be a very old man at this rate. Not that I am not already a very old man to some I know.   

I had wanted to go to one of the group meetings of this website but my significant other had said they are just looking for some A-- to F--- ?? I had thought O I guess you do not want me to go then ? I dropped  the subject and did not go.

 DO I have a question to start  a thread with? Or is this going anywhere?

Just as an old man the things you do today will be the memories of your tomorrows so forewarned is forearmed.

I will just drift around and drowned in my thoughts of life lived under the weight of HIV for numerous years. You my friend I hope you find a life worth living HIV or not. 

SO many drifting memories but like and old man once asked me when I was younger what are you thinking about ? I had said my memoirs he let out a critical laugh and said no one is going to care about what you have to say in your  life ? 

I hope you find this entertaining and respond with more interesting  ideas of your own.

I do not have many friends and those I do have after they leave  when I loss stuff and O loss stuff often I blame them. They must have taken it. then I find it most of the time and feel very stupid for blaming them. some times I loss stuff for quite along time. there is one of my many faults.

sorry to write so much I hope it was not to difficult to follow
well that is window into my drifty life how are you?

[em]

I had meant to say chunk of people as an expression of 1700 reads being a sum I thought large?

as far as going to the group meeting. traveling to a gathering of a group of people you met online. Might not be all that safe and what could go wrong is what I think was the intent of the message as said to me.

most probably looked at what was written and past it by thinking it was to much to read.

thank you for having a place an old man can share his thoughts on an illness he has had for a long time. Most of the people visiting this site  have not lived as long as I have lived with HIV. Having it and the fear of getting it.

As far as being forewarned as being forearmed. the things you do today are the memories that will either give you satisfaction distraction anguish and even sometimes disgust in your thoughts years later. I may be alone in this thought and this post but again thank you for letting me say what is on my mind and if it helps only one person to think about what they do and how they do it to make there world a better place.

like the guy who helped the  turtle across the street to safety. HE was told that would not change the world but to that turtle it was his world that was saved.

"Saving one animal won't change the world, but it will change the world for that one animal" A quote from a charity to save animals. just googled it ,  I think  the same thing could be said with a substitution of the word person? 

thanks again

[OneTampa]

Em,

You are not alone. As I am now going 33 years HIV+, I also have many memories. Beginning to chronicle a few.

Take care,

OT

[Wade]

Em,

OT is right, you are not alone !
I have memories of 30 years ago, the 3-5 memorial services a week, the scouring your body in search of spots.
I'm thankful those days are gone and I don't think of them very often.
I am not a writer so it will be rare to see a long post from me but your stories are always welcome and they are read.

Hugs,

Wade

[em]

My drifty Life

I have an anniversary that may or may not have anything to do with HIV. Then again  it might have everything to do with it. The time has passed of twenty years of  the same location I am living at. Once upon a time many years ago I would not have thought twice about walking many miles just to see if anything out there was worth seeing. the journey was moving just to move and get away from what was known and what might be seen and experienced .  Moving from one home to another was not a stranger in my life. New starts and new beginnings. 

Twenty years have passed any many many pill bottles of HIV medications. The activity of just moving around my abode seems just fine by me.  Lucky to have that much in my life

How is my health. I volunteered for a drug study but was not qualified by their admissions policy. I hope  some day who knows maybe something will come along better than what is now. Who can tell.

My viral load has been about ultrasensitive  undetectable for the entire time. but my Tcells are about 800. my triglycerides are high. My blood sugar is high at 190 my red blood cells are low at 15. I eat a high sugar diet to try and keep my energy up. The triglyceride are high do to the protease inhibitors  I have been told and I am sure my diet does not help. 

My skin is yellow and I get diarrhea every couple of days that is yellow. I googled it and it might be seroisis of the liver. I had an aunt that had drank herself into the same condition and she lasted for another ten years drinking heavy the entire time.
mine is more than likely from the meds I am on is my thought on it.

Life be willing I might be looking at another twenty years of good enough health. Good enough to see the world as non participant as a passenger .  count my blessings I am still above ground.  The view is better and life a bit slower being an just an occupant in the world rather than a contender in the fight for survival in this world a contestant in the game of life.

just an update addressed to anyone out there that might be looking for something to read about life and living in the age of AIDS.

In the future that is unwritten who knows what is instore. Like I have heard tell it is unwritten. Yet to be discovered. What might be in store is anyone's guess.

 

sorry to be so drifty just wanted to share some thoughts on health HIV and the life I live.

I hope others long life and as close to good health as possible.
thank you for having this place I can share my thoughts.

Maybe I should mention something from ten years ago that had weighed heavy on my mind.

The university I had attended had a film on AIDS in Africa and how bad they had it. They sent me an update from the collage on what was going on.
I had gone over there to try and find some old friends through the Alumni office. They threatened to have me  arrested for trespassing. I am no longer on their mailing list ? That one kind of hurt.

They did not know about the chapel in the old YMCA that was filled with people turned away from the hospital for not being sick enough they had  no place to go who where dying from AIDS around 1988 or so. the policy makers had closed it down and the police were called to throw  everyone out into the street.   

No one noticed the effects of AIDS in our own country.

That would have made a nice film to show at the college about AIDS here in the great US of A?  along with other people just barely getting by. Here in our own backyard.

they renovated the building making it into law offices because it was across from the courthouse. Cause lawyers need someplace to work is more important than dying sick  people with nowhere to go?

The eighties was long time ago. Now well what is the world like now I have turned my own blind eye to it. just trying not to dye and keep my own mental health intact has been my goal. like many other people.

Maybe some day some place I will find an audience to hear me out? Maybe the people reading this are the very people I should try and reach to tell them about life hardships and just getting by,

every day you live is a day closer to the day you die everyone has a limited amount of time in this world, each day should be lived loved with  peace  and joy.

I had taken a career placement exam and top of the list was priest? I just do not agree with organized religion the way it is now, I believe a pep talk should not need to referenced to things that have doubts and mistruths that are hard to accept even if the hard to believe is just what we might need as people to help overcome our own hardships in our lives . A long life is hard to believe and grasp when you think about it how many years will pass and how much gets done. Maybe believing as hard as it is is just what is needed.

Well I hope this read helps other traveling the road of HIV


all my best to you

EM

 



 

[leatherman]

My skin is yellow and I get diarrhea every couple of days that is yellow. I googled it and it might be seroisis of the liver......
mine is more than likely from the meds I am on is my thought on it.

how long has that been going on? It could be jaundice from a liver issue. Some meds, like reyataz, can cause jaundice. Have you spoken to your doctor about this? Jaundice, and the underlying reason, can be quite a problem.

Good enough to see the world as non participant as a passenger

Being a participant or a passenger is totally up to each of us. Living your life enjoying family, friends, hobbies, media, nature, voting, advocacy, volunteer work, etc are what makes us participants. Don't let life pass you by, be a part of life and enjoy the many things the world has to offer.

just an update addressed to anyone out there that might be looking for something to read about life and living in the age of AIDS.

here in the states, I don't know that I'd call this time the "age of AIDS". For most people those times are over 20+ years ago. Unless of course, you're newly diagnosed (with HIV or AIDS) in the South where 20%, give or take, still pass away due to late diagnosis and/or lack of access to health care.

That would have made a nice film to show at the college about AIDS here in the great US of A?  along with other people just barely getting by. Here in our own backyard.

"deep south" and "last men standing" are good movies about current times, while "how to survive a plague" is a great movie about the pre-HAART real "age of AIDS" in America.

Maybe some day some place I will find an audience to hear me out? Maybe the people reading this are the very people I should try and reach to tell them about life hardships and just getting by,

many ASOs use clients to talk to others about living with HIV. Talking about life hardships living with HIV is often a good tactic when advocating to legislators about the need to fund ADAP, HIV prevention, and treatment.

[em]

sorry to have written so much

My aunt who passed away form liver disease her eyes were brown. the white of her eyes were brown her skin was very dark and she drank beer all day  without eating. For about twenty years before it was so bad she was placed on life support.  Her daughter had thought she had had enough and pulled the plug allowing her to pass away.

My condition I think is from the meds I had taken reyataz  for quite along time. I eat well, three meals a day. I should last for quite a long time still. My blood work does not show anything imminently life threatening at this time. the whites of  my eyes are bright and clear not at all brown. even though I do get hand cramps at night from time to time. I am old and well some things of getting old should be expected.

 

disclosure of status

My life I while ago . while in a play we were going over somethings and this friend was helping me to get this scene right we worked on it for a long time and they  had said now you have it and kissed me on the forehead and I smiled and she said she thought that is not a gay man's smile cause everyone that worked there had told her I was Gay and not to waste her time on me romantically.I had invited her to my home. before we did anything intimate I sat her down at the my kitchen table and made sure there was nothing in her way to the door leaving the apartment and left the door completely open.

I told her to have seat then after making her some coffee I sat her down making sure there was  quick egress  available if chose to leave. making sure there might not be anything for her trip over in her haste to leave.if she decided to make a quick get away out of there.

I had said I have HIV she looked as if she might cry and after a  long moment of silence said she was not going anywhere. I got up and shut the door. I made us something to eat and I had given her every opportunity to leave and  save herself from watching me die from AIDS.

That was over 25 years ago. we have two children that are teenagers  now.

there have been moments but every one has them why should we be different in that respect.

I keep having day dreams about a AIDS related romance stories about living along time with HIV.  after all write about what you know is the advice I heard people say.

what I would like to see in an AIDS related story  is a wealthy lonely person that has no one in there life but loneliness, nothing but wealth and time to spend and money to enjoy it. with no one to share it.  meeting someone with nothing but a cheerful out look and a zest for life complementing each other and finding love even with HIV.

Having the wealthy person getting lost in the wrong part of town and being guided out of there predicament  by someone they meet who has  HIV and not much else  helps them to find there way each making a life worth living together.

just a day dream i thought worth seeing and making. I day dream maybe to much about stuff like that.

I had written a lot more about it but do not want to bore the people here with my day dreams even if they are sustiva induced strange dreams. 

Just my late night thoughts on HIV and AIDS I hope everyone here has a good read and day dreams of there own

good night

[OneTampa]

I had written a lot more about it but do not want to bore the people here with my day dreams even if they are sustiva induced strange dreams. 

Have written about my vivid Sustiva dreams on the Boards here over the years.  I call them "Sustiva Cinema Productions Presents". 

Here is a recent post sample:

https://forums.poz.com/index.php?topic=65607.0

[em]

very cool story about riding through the clouds OT

The story I would like to see come about unlike a big movie star finding someone half his age and the younger one says HIV does not matter. without the big movie star connections and wealth would she still be feeling the same way?

That is a story I would like see where someone who has nothing to offer a relationship in the way of wealth and connections and also has HIV which to most who are in the know is no big deal but for those who do not know this might be a way to get the message out ? . Even if this could only be possible in a Hollywood version. Like pretty woman but with HIV? 

Just thinking about a story like that makes me think  it might be a story others might find believable and therefore make the HIV I Have carried for so long no big deal any more. That would make me feel better about having lived long enough to see such a change come to be and have others feel the same way.

the story would be more about LOVE being stronger the than HIV and AIDS? That being true anyway. Just an example of it. Instead of mane stream movies saying AIDS is a punishment for bad deeds or what not. This story would be a message saying it is just a small obstacle not a end all just a small bump not a catastrophe.

At least it is not a bad as it was, a format for educating people that it is not as bad as it once was and can be and will be and should be not an obstruction to life but something less?

sorry if I did not make my case for this idea and made it worse by stating what I think other not informed of the current state of HIV might be thinking .

Just wanted to say that such and idea to me would be something I would like to see to show HIV and AIDS should not block a relationship even if other factors are in play as well.  By not preventing a happily ever after story.

Just a thought if I see something like this some day?

sorry again I might be beating a dead horse here but the thought of helping to make this idea into a reality or at least a concept worth thinking about makes me think it worth while endeavor to write about. thank you for having this site I can share my thoughts on,
 

two examples from the eighties of TV shows that mentioned AIDS in what I thought was demonstrated  examples of treating AIDS with compassion and kindness.

21 jump street way back when had an episode where Johnny Depp's character had met a guy with HIV then later in the episode he is being interviewed about how bad HIV and AIDS used to be when he is an old man he says thank GOD we found a cure . granted that was him as an old man looking back. another show Saint Elsewhere. Had a doctor who finds out he is HIV positive and he gets some curare from the pharmacy that is poison that kills by stopping nerve signals I believe. Anyway he goes to take it and some water is leaking from his sealing and goes to investigate and this younger neighbor had let her tub over flow and was so upset about it . he changes his mind about suicide and finds someplace to be a doctor helping people with HIV ? 

Thank you for having this place for me to share my thoughts

[em]

I just read some of my old posts as well as other things posted by others. My posts had  bunches of mistakes and lost thoughts I am so sorry for that.

My HIV day dream. could be about any mixture of sexes a guy runs into another guy or a woman runs into another woman. or a rich guy and a poor girl. Or a rich girl and a poor guy. an old man and a young girl or an old woman and a young guy, could be anyone talking to anyone across the great divides we live with in this world.

see if this works a romantic comedy that includes HIV

this wealthy person who sits and eats alone at a very large table being served by their staff at a very large home. walks down very long hallways alone and goes about life without anyone special in it . has everything and nothing at the same time.

then at work while sitting in their corner office a co worker suggest they use their luxury yacht in a well to do harbor. they suggest getting out and seeing other people living their lives might do them some good. they think who knows they might make some friends out on their yachts.  they reluctantly agree. so after work  they set off

meanwhile this other person who goes about there life being greeted by everyone they meet with a smile and a quick do you have a dollar they just  say sorry not today my friend   ? outside this home less shelter were they are a social worker trying to help people down on their luck.  they keep smiling trying not to let everyone's look of despair and hopelessness rub off on them. they go about there life with friends and people all around them that see how they are trying to help as much as they can, even working in a soup kitchen to help in anyway possible and always with a smile. has everything and nothing at the same time.     

close to the harbor the wealthy person gets lost on the other side of tracks, they pull up in a very expensive looking car to a complete stranger and say pardon me but I have seem to have lost my bearings can you tell me how to get to the harbor from here? the person the meet says O but of coarse. I was just heading there myself. I only dress this way while slumming it with common folk  on this side of town, . In a very high brow posh manner. while looking down their nose, then they say just kidding sure you go down here and take a left. then they say tell you what you take me out for something to eat in exchange for directions I would even be your navigator tour guide and  show you how to get to your destination it would be easier then trying to tell you.

The driver looks at them for a short poss and says sure why not. they complement each other both having so little of one aspect of life but so  much to offer each other in other aspects and well the romance begins.

then the story goes on from there. o ya the yacht is huge and luxuries right out of life styles of the rich and famous. 

I had this better version about disclosure to a just met stranger at the door to the homeless shelter that is their life  but here is a shorter version

then the person from the homeless shelter wrong side of the tracks with nothing to offer the wealthy person in the way of social standing says about their HIV. the wealthy person is taken a back but their inner caring for this person over looks the virus  and they talk about how HIV is now something that can be lived with

well I had a lot more written about from the past few days but anyway you get the idea ? 

pretty silly story but it is what i day dream about while looking at the night sky and thinking what other people might be doing with their lives

thank you for this place to share my thoughts

I would like to play the wealthy successful person as far from my real life as I could get Or play the person living on the wrong side of town been there dun  that sorry but I was not to happy about it and it was not easy I did not feel the love  . but maybe I am to old and out of it to play a love interest anyway. If anyone younger wants this story idea or just to use this idea as platform for a good day dream feel free cause it don't cost anything to day dream and for me it helps me feel more fulfilled to think about other aspects of life.  and what others might like to think about,

 
 
HIV be dammed don not give it any strength in your life or control of it  ( easier said then done some times)  but it can be worth striving for.  I hope everyone with and without this virus has a good day dream or two now and again

sorry I am going to give you a break from my ramblings. my biggest hope is a story like this inspires at least one person or maybe more to make a story about HIV that has a message of hope and over coming obstacles. I did see an after school special  long time ago  about a woman with HIV that this single mother had taken in to watch her child it was very uplifting and it was a long time ago.

thank you for letting me share my thoughts I think I Have taken up enough of your time

[leatherman]

how long has that been going on? It could be jaundice from a liver issue. Some meds, like reyataz, can cause jaundice. Have you spoken to your doctor about this?

sorry I am going to give you a break from my ramblings. my biggest hope is a story like this inspires at least one person or maybe more to make a story about HIV that has a message of hope and over coming obstacles

you should do it yourself! take these "ramblings" and flesh them out, working them into a book of short stories, plays, or scripts. Why hope for someone else to do it, when you can do it yourself.

[em]

    " how long has that been going on? It could be jaundice from a liver issue. Some
      meds, like reyataz, can cause jaundice. Have you spoken to your doctor about
      this? Jaundice, and the underlying reason, can be quite a problem. "

I have an appointment later this month with ID

Usually I walk in and say everything is great feel great no problems how are my numbers and leave? This time I will ask about the dark color of my skin and the diarrhea and muscle  cramps in my hands. The reason it came to mind was my aunt was staying with my family when she was ill and she woke up at night in pain from muscle cramps on her hands. That I now have as well. I look at this way I have lived much longer than I had thought I would that is for sure. Every day above ground is an added bonus at this point

the diarrhea since  I stopped taking norvir has subsided to a lot less often. They had taken me off reyataz about a year or so ago. I hope my jaundice clears up  but I will ask about it.

thanks for mentioning it


that is my dilemma how is your health leatherman?

[OneTampa]

    " how long has that been going on? It could be jaundice from a liver issue. Some
      meds, like reyataz, can cause jaundice. Have you spoken to your doctor about
      this? Jaundice, and the underlying reason, can be quite a problem. "

I have an appointment later this month with ID

Usually I walk in and say everything is great feel great no problems how are my numbers and leave? This time I will ask about the dark color of my skin and the diarrhea and muscle  cramps in my hands. The reason it came to mind was my aunt was staying with my family when she was ill and she woke up at night in pain from muscle cramps on her hands. That I now have as well. I look at this way I have lived much longer than I had thought I would that is for sure. Every day above ground is an added bonus at this point

the diarrhea since  I stopped taking norvir has subsided to a lot less often. They had taken me off reyataz about a year or so ago. I hope my jaundice clears up  but I will ask about it.

thanks for mentioning it


that is my dilemma how is your health leatherman?

Glad you will see your Doctor as Leatherman suggests EM.

Hope all works out for you.

Take care,

OT

[em]

My ID appointments.

when I go to my appointment  I see in the waiting area there are usually a few other patients I think  while looking around that it looks like a scene from night of the living dead with zombies all around that have this  far away look on their faces and a look of despair in their eyes . I think o my god do I look that bad too?  I probably do but try not to think or notice it , It gets hard to think positively I think for anyone who has had HIV for a long time. Just an observation,

maybe a HIV zombie story and how a lone voice in the dark lifts them out of the funk they find themselves in? 

sorry back to the romantic comedy story. have the person form the homeless shelter discloses and say they have to get back to the shelter to take  meds and the wealthy person says funny me too I also have HIV. the other person says not funny, they say not kidding I have me ID doc on speed dial and can get your meds for you if you do not want to go back to the shelter? they say the wait  is to long and getting the meds they already have would be easiest. this way it would show that anyone can have HIV.

sorry just a thought that made me think it might be a funny spin on the I am alone in this dilemma

writing it down myself I had done that and when the weather got cold I burnt the notebooks in a fire just because they were so depressing and no one would ever read them anyway they were disconnected incoherent ramblings with no value. sorry to share my thoughts so much here. I hope they are not to hard to read I have no where else to do so? 

I hope this is not to much confusing free thought stupid stuff. Just wanting to share what I am thinking. hopes and dreams and stuff.

 



 

[em]

I had wanted to add this to show it is not all bad but the modify function was not there anymore

 a while ago my regular  ID doc was not in. I saw this younger doc I had met years ago. She seemed depressed and said this is really getting to me.  these people here she said so I made couple of humerus references about life and she laughed and said thank you I am so glad you had this appointment today . she had cheered me up years earlier and i felt glad to return the favor.

some times things worth doing and even a ID appointment can turn out unexpectedly well

[3DollarBill]

em,

I've always loved your posts and find each one interesting, insightful, and often you have entertaining/amusing bits, like cheering up the ID doc.  my ID doc usually has no time for anything but quickly going over tests and whoosh -- he's gone!  his nurse spends more time with me than he does.  Keep working on your story -- you may be able to get it published or sell it to a movie producer!

I hope your jaundice issue can be addressed -- I had hepatitis A 35 years ago and looked like a partially ripe banana for weeks. 

Take care!

[Wade]

Hey Em,
Be sure to include at least a chapter on us in your book, there is plenty here to gather from I don't think I shared I sneaked in some old rabbit ear antennas in for my last HRA. I put them on my head during the procedure and asked if he could get HBO on his little monitor.  The nurse was laughing so hard she had to leave the room which prolonged the event...but oh well...

Life is funny...write about it before you clean it up.     

[leatherman]

I have an appointment later this month with ID

awesome!

Usually I walk in and say everything is great feel great no problems how are my numbers and leave? This time I will ask about the dark color of my skin and the diarrhea and muscle  cramps in my hands. The reason it came to mind was my aunt was staying with my family when she was ill and she woke up at night in pain from muscle cramps on her hands. That I now have as well. I look at this way I have lived much longer than I had thought I would that is for sure.

in another thread we were discussing the supposed "toxicity" of meds and spoke about short-term and long-term effects. One thing that came up was that our doctors never know we're having problems unless we tell them. Make sure to make a list of your issues and discuss each one with your doctor - that's what you pay them for. You shouldn't be having to living with some of the problems you described and your doctor is the person who is there to help change some of those issues for the better.

Every day above ground is an added bonus at this point

amen, brother

that is my dilemma how is your health leatherman?

my health - after 32 yrs of being poz and 24 years of meds - is pretty damned good for a 55 yr old. Sure I have some aging issues and sure living with in an AIDS situation for 15 years hasn't helped; but switching to some more up-to-date meds certainly make a turn-around in my health for the better. But this isn't about my health, this is a discussion about your jaundice and diarrhea issues for which you need to seek some medical attention. Imagine that. LOL It's your thread and we're talking about you.

[em]

Just wanted to apologize for writing so much. wanted to do this days ago but the responses made me rethink my selfish need to tell my story and write about my HIV existence. was not such a waste of time. Feeling it is selfish and inconsiderate of me to write so much about myself and not considering everyone else and their time . This thread may have been started by me and about me for me well  enough about me tell me what you think about me ? Ultimate selfishness instead of selflessness and caring about others going through the same thing again sorry to take up so much of your time here. 

Just hope it was not to difficult to read. I am guessing by the read number it must be funny or something to get the attention of readers. Not viral or the most read thing here but got some readers.

A thread about me. that is so not the person I want to be. Just concerned with myself.

feeling a bit tired and down and reading to much into everything that is said nothing to do with HIV just another one of many flaws in my character.

Still think day dreaming about an uplifting HIV story makes me feel such a story might be something everyone HIV positive and not might enjoy seeing. Just my  thought on it.

I hope everyone gets the info they need from this HIV support forum website

all my best to you

Me I am going to check out the night sky and all the stars

thanks for letting me share my thoughts     

[em]

FOr the past twenty years or so I have not been to a support group.  I just come here and read what everyone else posts but do not have the nerve to respond to every post I read. I used to write on the other board they used ot have here the one where everyone would instantly reply and mostly banter and just write anything they thought of.

Things change.

just trying to clear my mind and think of something to fulfill my desire to be part of something bigger than me and bigger than HIV .

hope you all the best

[em]

IN case I did not completely wear out my welcome here


I had my Id appointment and the ID doc said my eyes would be one of the first signs of liver problems but they ran the tests any way ?

My t-cells are 730 from January they are always lower in the winter for some reason.
Undetectable again. Have been for some time as far as my memory or my recollection for twenty years I have it has been that way.

I had written a long version of the past twenty years of being just getting by not doing much in the way of life achievements. But that might be to depressing I should be grateful for the time I have had and the time I have yet to come.

good cheer and happy times ahead.

[em]

I checked about local support groups and the one offered locally is called gay men's HIV support group ?

I guess women and children are not welcome? along with anyone who might not be into the scene or might be unavailable ?

funny I recall about twenty years ago the support group I went to had a women who had said she got hIV from her husband and after I had met him he was on death's door skinny as rail  and gaunt scared me to the core cause I thought I was looking at my near future. which did happen to me without any viable medication the end seemed very close and  inevitable. then it turned some what around and death was not as close new drugs extened my life. not as great as a cure but still better than the alternative

One guy at our  support group got upset because he had noticed a lot of men he was sleeping with had said they were not gay. they just did not mind having sex with him but did not want him having sex with them if you get what i mean without going into details

Funny how some people think. the other side of that might be what another guy had said he did not consider himself gay because when he was younger  the older men he had met told him he was gay because they had sex with him. Even though they had kind of taken advantage of him because he was raised to respect his elders and do as he was told. I guess  the fashion of the day at least as far as he knew was sex was important to happiness even if the that kind of sex was not what he had wanted. It was what they had wanted and they were not the one with the problem because he must be gay to let them do what they did ?? if that makes any sense?  it was their secret and he must not tell anyone cause they would know he was gay and being gay was not a good thing and would cause him problems if any one  new ?  Keeping it a secret would keep them from getting arrested for molesting a child I guess was the true reason.

the beatings from bullies at school and taunting that happens then into adulthood who needs that in their life.  If that is the fight you want to endure more power to you. I wish you only the best. 

.  but wanting others to do the same because that is what you want I do not agree with and live and let live. I have met men that came out as gay after raising a family I have met men who have been exclusively gay there entire life. I have men who were molested as children and thought it was becasue they were gay. I have met  women who O my god confuse me out of mind but understanding  women is not something any man can truly  claim to know ?  If you have figured out  you are much smarter than me cause I am at a loss.   



gay men's HIV support group discrimination for those of us who do not think like they are supposed to. if someone had sex with a man it must be because they are gay not because the choice was not available at that time for them just trying to include anyone who might not want to be forced into to a gay closet because of HIV. you have it so you must have done something to deserve it and the stigma of being HIV also has the stigma of what kind of sex you must have had to get it . I just would like to think  if anyone has sex it is not up to others to judge a person for it. and label them hiv positive, gay or not gay or not who has sex with who should not come with labels for anyone homo sexual or not should be up to the individual to decide what they want not what others want .



sorry just wanted to share some pent up anger about being judged by others about having HIV

gay men's HIV support group is that so they can use it to hook up and know everyone who attends is fair game ?

why gay men's support group what is up with that ? maybe I will write to them about a separate but equal group for the rest of us ?

sorry i have spent a lot of time working on this and hope it was not to much

[harleymc]

I checked about local support groups and the one offered locally is called gay men's HIV support group ?

I guess women and children are not welcome? along with anyone who might not be into the scene or might be unavailable ?

Personally I'm happier in inclusive groups rather than exclusive groups.  If you feel there needs to be an inclusive group in your neighbourhood, then start one.

[em]

just sent my local AIDS group an email introducing myself and asking about their  support groups now I just wait and see.

the other problem is I have children I watch after school they get home at around 2:30 in the afternoon and the support group runs from 1 to 3 in the afternoon and is about an hour away from here. SO I could not go anyway. I can still find out about the local AIDS groups and what they do.

for the longest while I cept thinking this might be my last day and then the pills starting working but the thought of the pending doom and the end being near I guess never left me. even after twenty years of waiting for the end that never came at least so far. ya now that I mentioned it and may have jinxed it I might have a massive heart attack tomorrow for rocking the boat.

at least I have had twenty years of pill taking and waiting to welcome and end that was not to be. Hey taking these pills and staying alive has led the way for others with HIV to know time is not against them. now they know they to can have many years of life ahead of them. so in way my life was not a complete waste of time. I have accomplished something just by not dying the way I was supposed to.

the way I understood it you get HIV then you die. that was the way it was thought hiv was going to do  well I did not do that a small act of insubordination. by not doing what I was supposed to do by not dying when told to

I think another twenty years may be in store for me cause I have yet begun to give up roll over and die .

maybe another support group might get started and I can compare HIV ups and downs and what is going on in the world I have been hiding from for twenty years

all my best to you


   

[em]

My local HIV support group got back to me and they said they are planning to open a men's support group for men who do not identify as gay. so we shall see

health issue

 do not know if this should be a new post or just some stuff about my favorite subject me  only a vain self absorbed uncaring HIV diseased person would write so much about their own life? or maybe an isolated lonely old man trying to share the only thing they know much about.  that is their own life

My uvula is small on the end and thick at the attaching point of the roof of my mouth. the back of my throat does not function as well as it should  I believe it is the result of extensive damage from thrush in my mouth and throat from over twenty years ago when the meds I was taking did not seem to be doing much of  anything regarding my immune system.  If I eat too fast and swallow to quickly food instead of going down my esophagus ends up getting lodged in my bronchial tubes. I get food stuck in my air way instead of going into my stomach. I just need to slow down and eat cautiously I guess any one eats too fast might have the same result sometimes. It just happens more often then I would like. one of my many faults I guess and wanted to write about it because it is my mind it is a result of advanced untreated HIV disease AIDS ( because nothing at that time was viable treatment for HIV over twenty years ago )   AIDS from years ago that never healed right leaving scarring in my throat  from a very bad time in my life. Maybe just a sign of getting older too

thank you for letting me tell stuff about my life here   

[leatherman]

but the thought of the pending doom and the end being near I guess never left me. even after twenty years of waiting for the end that never came at least so far. ya now that I mentioned it and may have jinxed it I might have a massive heart attack tomorrow for rocking the boat.

you're not alone in that boat. I'm very thankful that I'm feeling so much better these days; but I can't forget the nearly 2 decades when death wasn't just knocking on my door, but waiting in the hospital room with me. Even though the last decade has held an incredible amount of improvement in my health, I still can't shake the feeling some days that I'm just biding my time waiting for the other shoe to drop. A low cd4 and high viral load spike a couple years ago, and two severe allergic reactions last year didn't help tamp down that nagging fear. When the worries hit, I just try to remember what all I have overcome and rely on that strength (and luck!) to get through whatever comes my way.

[leatherman]

If I eat too fast and swallow to quickly food instead of going down my esophagus ends up getting lodged in my bronchial tubes. I get food stuck in my air way instead of going into my stomach. I just need to slow down and eat cautiously I guess any one eats too fast might have the same result sometimes. It just happens more often then I would like. one of my many faults I guess and wanted to write about it because it is my mind it is a result of advanced untreated HIV disease AIDS ( because nothing at that time was viable treatment for HIV over twenty years ago )   AIDS from years ago that never healed right leaving scarring in my throat  from a very bad time in my life.

I've got severe scarring in my throat from thrush also. Sometimes the tiniest piece of food can get stuck blocking any swallowing ... and sometimes any breathing. About twice a month, I have an episode. I've had to have an endoscopy done twice in the last few years, with the balloon stretching my throat out. There have been several other members who have had this issue too, some of them who have had to have the balloon procedure done once a year! Swallowing episodes are scary, painful and something that can't be corrected, so it's a lifelong problem. I've learned to eat slower and avoid some of the foods (bread, spices, mustard) that seem to trigger this problem for me.

[em]

you're not alone in that boat. I'm very thankful that I'm feeling so much better these days; but I can't forget the nearly 2 decades when death wasn't just knocking on my door, but waiting in the hospital room with me. Even though the last decade has held an incredible amount of improvement in my health, I still can't shake the feeling some days that I'm just biding my time waiting for the other shoe to drop. A low cd4 and high viral load spike a couple years ago, and two severe allergic reactions last year didn't help tamp down that nagging fear. When the worries hit, I just try to remember what all I have overcome and rely on that strength (and luck!) to get through whatever comes my way.

   

 after seeing what the virus was doing to others about twenty five years ago. I recall hoping for and  praying for a heartattack in my sleep to spare me from the the fate I saw in my near future. I tried a few times to kill myself so as to avoid the suffering HIV was going to cause me  in my life

was unsuccessful at ending my life and did not have a heart attack but the suffering was endured obviously cause how could i write this if  I were dead.

dead and nearly dead a world apart

 i hope you all the best

[em]

here are two old stories about HIV from the eighties. I know old news that time is in the past and should stay there.

this is from a long time ago. I hope my memory recalls the details as wells as to be expected for thirty year old recollections. This is what info was  thought thirty years ago not what they think now is my belief on the subject.

Ryan White ones  during a TV  interview I watched a ,long time ago said during the  interview. there is HIV in saliva but from what he had been told in order to catch  HIV you would have to drink a quart of someone's saliva to even run the risk of getting it ? Or something like that it was about thirty years ago I saw that interview and was moved at how strong such a young man he was to talk about such a unwelcome and stigmatized  illness even back then when it was thought if you had it you died from it.


 I only recall it because  the memory of why anyone would even think of something like drinking a quart of saliva and telling that info to comfort a young boy. hey it worked I guess and well anyway check it out and see if it is not there if it is not someone might have not kept that part in the archives it might have been a live interview and lost to time only remembered by a watcher who recalled seeing it on TV in the first person? Maybe someone who actually new Ryan White and is still alive might recall this interview ?. sorry to name drop and use Ryan White's name but it was his interview and if memory serves correctly it was what I recall he said those thirty or so years ago .

that is someone with an unchecked viral load compromised immune system and a higher HIV level in their body .

are the many of us who are HIV positive who recall seeing his interviews on TV as they happened?  just checking to see if I recall correctly? 


second story

while visiting my mother and family many years ago. In the mid eighties I know ancient history to some but this story seemed funny to me then and still makes me wonder about how some people think


My brother was in high school in the mid eighties I talked to him one day after he got back from school he looked very frustrated, agitated distraught and forlorn

I asked him what was bothering him

this is about how someone thought HIV made the jump from Apes to people

this high school teacher had said to his class that there is an island resort off the coast of Africa that had specially trained apes that for a fee interested adventoris tourists  could have these apes go to town on them. In a homo sexual fasion. OK  I hope you  get the idea without to many details ( must have read it in a dirty magazine or some satire news letter or just made it up )

this was an American public school  teacher had told their class this was how hiv first infected people

if the virus can only be spread exclusively through gay sex than that is the only logical way it could have happened  ?


that was then now we know more ?  or do we ?

what  I believe to be more likely what might have happened is an ape carrying SIV was wounded by a hunter. when the hunter got close enough to inspect their kill the simien  bit the hunter.  with their last gasp of life and then grabbed the hunter by the wound with there hands drenched in there  freshly spilled  SIV infected blood.   That great hunter then  had sex with some other men who intern had sex with other men and the virus spread from there. that is if only gay men got HIV.

 that would be the start of the chain of infections. just a guess but not as distasteful as the teachers proposed scenario.

well just a more palatable way it could have jumped from simians to people. even though something strange thoughts and the sad part of life whatever sick thing someone can think of someone else can always top it and than the real stuff truth is  stranger than fiction occurs rather readily

The polio vaccine using chimpanzees to grow the vaccine instead of reases monkeys   
we know now that chimps carry siv. possible starting point of the virus? there was documentary on it


just an old man's guess on a more realistic early spread of the virus

feel free to have your own opinion how it started.

 may have been here all along and just went unnoticed while people were dying from many other reasons no one noticed the pattern or the illness ?   

hope fully these old stories from how people thought in ancient times. way back in the eighties is a way to show how older people were influenced and thought  about AIDS   

well I hope these stories are entertaining and not to much a waste of your time to read or my time spent writing them.   

 all my best to you
happy reading

[em]

living in the past

about almost 25 years ago. I had gone to get blood drawn, the person doing the bloodletting looked at my arms covered with track marks  turned white and left the room leaving me there to my thoughts. I do not know what her thoughts where? BUt the white look of shock on her face. SHe must have thought I was shooting myself up to escape my fate or something or the look on my face of hopelessness. the track marks were from all the blood work they were doing and blood transfusions and testing. I can only surmise they wanted to know what was keeping me alive.

that was a long time ago

but it still haunts me.

when we get old all we have is our memories I was once told and that is one of mine

thank you for having this  place  I could share my thought in

all my best to you

[OneTampa]

EM,

Quote:  "Living in the past..... when we get old all we have is our memories I was once told and that is one of mine"

I call it "Crystal Reflections".

There are many memories that shine to nearly blind

They are so bright yet we don't relinquish as we distinguish each one

We recall our plights, sounds, colors and sights

Until they are no longer mystical but clear and crystal

And we make soulful connections to our reflections.

______


All The Best,

OT

[leatherman]

Until they are no longer mystical but clear and crystal

that's beautiful.

...and totally explains why those thoughts still sting;
but also why i haven't drowned in the sorrows of my past

[em]

long ago memories

[em]

wow I just spent quite some time rewriting some stuff but when I went to post it it said the time limit for modification had passed

I was bidding on ebay on a rare collectable and was sniped in the last 4 seconds

well that is my drifty life

maybe some other day I will try again

not like the stuff I write changes anything

if you or I do have intimate relations with anyone

we would disclose and if the person does get HIV do you think they will blame the anonymous person they did not even get a name from who does not know their status or the person they know has HIV

sorry I should have saved what I was writing lesson learned

all my best to you

[leatherman]

sorry I should have saved what I was writing lesson learned

any time I write more than a brief reply, I write my post in an offline word processor (notepad, Word, etc) and then copy/paste the text here before hitting post

if the person does get HIV do you think they will blame the anonymous person they did not even get a name from who does not know their status or the person they know has HIV

if they knew they were having sex with someone who was HIV+ (the person who disclosed), you would hope that they understood the risks and took precautions (either PrEP, condoms or TasP) so they shouldn't be "blaming" the person who disclosed but should blame themselves for having unprotected sex with someone who didn't know their status.

[em]

any time I write more than a brief reply, I write my post in an offline word processor (notepad, Word, etc) and then copy/paste the text here before hitting post


if they knew they were having sex with someone who was HIV+ (the person who disclosed), you would hope that they understood the risks and took precautions (either PrEP, condoms or TasP) so they shouldn't be "blaming" the person who disclosed but should blame themselves for having unprotected sex with someone who didn't know their status.

I had copied it to AOL compose to save ruf drafts butt then kept adding to it over in here. just got so ahead of myself this time limit did you a favor in not having to read the long winded post I was making anyway

I had written more about disclosing then the person you disclose to finding out they have it. about genomic testing of the virus and prep but not everyone takes prep or even if the HIV positive person used a condom they would still only blame the person they knew and that told them.  like the things you do not know can still hurt you. the same is true that the things you do know can also hurt you if used by the wrong minds

just my own doom and gloom always thinking the worst. but when I am wrong I am so pleasantly shocked it makes my existens of what is the worst that could happen into wow that was so great and I was so wrong


the way the story was going

the towns folk get out the pitchforks and torches and go find the person who disclosed their status to show them the error of their ways

just a thought on what is the worst that could happen

[em]

let em try and share a hopefully short version of the story I was going to post on thanksgiving and then again last night

when i was a young boy I had an aunt she was actually my mother's cousin

her mother had hung herself on thanksgiving when she was a young child

My mother for some reason had her childhood picture of her in her photo album of her wearing a black dress and crying at her mother's funeral

she was a psychiatrist a full medical doc with speciality in illnesses of the mind who counseled and treated  troubled children

she and I had spent a lot of time together.

when i was a young boy she came over to our house and had thanksgiving went home left a note that she was going to join her mother and hung herself 


her sister came over to my house and asked if my mother and I wanted plant flowers at her grave it was in the spring. my mother asked me if I thought of anything I would like to plant. I said yes fiddle head ferns. she asked me if we had any around our yard. by the road was an old watering hole that had them growing on the edge of it. I dug up two yuge bulbs  then gave them to her. My mother said we had other things to do and could not go the grave. the sister came back a few months later to say the fiddle head ferns had overtaken the grave and a large area around it, she asked what could be done to contain them. I had told her the sprouts are edible in the spring.

ten years or so later on thanksgiving I was in an enlisted club at the nato base in Naples Italy. when this song played. it went on with repetitions of  ( her name here )   
who can I turn to

My mind went blank and I could not hear anything. I blocked out the words stinging their painful sound in my ears and went the back of the bar to hang my head down and drink my beer

this girl comes over and says HI my name is ( her name here ) how can I help you

well I told her the story about my aunt and she tells me about her husband keeping her around so he could keep his housing allowance.

then she asked if I wanted to dance   

a great time on solemn occasion for me

a while later I saw her yelled out HI ( the name she told me ) SHe says as this guy in a marine uniform walks over this is my husband

then he gives her a stare and says say it

she then painfully says My husband told me to tell I can not hang out with sailors  anymore cause they have AIDS

I put my hands up and walked away as she turned her head crying and he just smiled with a big grin having gotten her to say what he wanted


maybe not the truth the whole truth and nothing but the truth just a story from a long time ago

that still pulls at my heartstrings. there is a lot more to that story I may have even posted it before here or even some place else. I had wanted to post it on thanksgiving but saved it to bury it in box to be found by others many years from now

that was a romantic bitter sweet story from my past . I have tons of them

ONe night I went for a walk and met this guy at a coffee shop who seemed  on the verge of tears. I talked to him to try and cheer him up. as he talked I thought he might be gay but was not seeming to gay at that moment

after a while of our conversation he said he had just found out he had HIV

I tired to talk to him and cheer him him up with some company. as best I could

  A couple of years later when I found out I had HIV I talked to this girl I knew who tried to cheer me up the same way.  life little calamities repeating themselves

  just a stray thought from an old man's recollections of life lived with aids and HIV

I hope this was a good read and not to off topic

all my best to you

[em]

I have a computer and I have food and I have medication so how bad could my life be. I live close to  other things i dreamed about as a child woods trees the beach lakes all with in what my young mind thought was walking distance. But with my low red blood cell count and low blood oxygen walking is just a distant memory of my misspent youth, My healthcare provider gave me a CPAP machine but the thought of living with the help of a machine does not seem to be something I can easily accept


These posts  have been more like journal entries then short blurbs maybe that's why I have not been able to strike a cord and get a large amount of responses.

My mistake and failure to not understand what the true purpose of these forums are for at least now they seem to be.  The last website poz had the responses where quick plentiful and sometimes not the easiest to read and respond too but things change

Like HIV changing from a deadly scourge illness destroying everyone that it  touched to a livable manageable illness.

My secret agenda was to try and reach out to others with HIV and help better myself and others with life experiences of mine that might help  me see outside of myself and inspire others with the same struggle to do more with this one life we have been given. To not let it slip by unnoticed and unaccomplished . I may have lost sight of how lucky I am to make it this far. but it has been a struggle.

thank you for having this place and thank you for letting me write this pointless drifty ramblings   Please pardon my out of touch  ignorance blinded by the desire to write to anyone who might be willing to suffer through reading it. 

 the melancholy feel of this post just me  writing about what I am thinking



Is my writing here preventing other long term survivors from posting ? Is what I write that bad . It is not my intention I hope the rest of us feel the desire to communicate with each other I believe HIV can lead to isolation and despair and self imposed stigma.
or is no one writing here hoping I will loss interest and just go away


all my best to you and merry christmas